While at work In 2015, I felt a slight twinge like pain behind my knee, I remember my work colleague asking if I was alright when he seen me rubbing behind the knee and repeatedly bending and straightening it, I told him ‘it was old age and I’ll be fine, I’ll walk it off’. It was another 4 days, after a shower, when I noticed that the leg was an unusual colour and looked to be quite swelled compared to the other. That night, I was kept awake most of the night with leg cramps and feeling leg tightness in that one leg. The next day I hobbled over to my GP, who recommended that I go to A&E as he suspected it was a DVT.
It was confirmed to be a DVT behind the knee, in the Popliteal vein. The reason for the DVT at the time was attributed to smoking and the combined pill. I was fairly active at the time, my job, as a Restaurant Supervisor in a Hotel required much of my time to be on my feet, there was no long-haul flight or period of being sedentary.
I was treated with anticoagulants (DOAC) and 4 months later, I attended the GP again, as the leg, which had been improving was gradually getting worse. Again, I was referred into A&E and an ultrasound of the leg was preformed and a recurrent of the DVT was diagnosed. I was switched to Warfarin and started attending Haematology in GUH. I was diagnosed with Post Thrombotic Syndrome as a result of the DVTs and advised on proper compression stockings to wear.
After being therapeutic on anticoagulant, I was taken off Warfarin in early 2017 and all was going great for the next 18months until one evening in August 2018, after spending the day walking around Lough Boora Park, I felt that same twinge behind the knee. Again, I was referred into A&E, where a DVT was confirmed, again in the Popliteal vein. Warfarin was restarted and some 12months later after consulting with haematology, we made the decision to switch to one of the more easily manageable DOACs.
I remained on these for the next 3+years. The leg itself never came back to its rightful state. I walked most days, wore the correct compression socks but still the leg was painful, swelled, tightened and of a blueish colour. Then in 2022, I was diagnosed with May Thurner Syndrome and had an iliac vein stent inserted in Sept 22. At this point there was some slight breathlessness, but as usual I pushed through it and did not think it a major issue.
That is until the end of January 2023, while at home on the treadmill, after a few minutes I found it extremely hard to breathe, I stopped, took a minute, and tried to go again. Again, I struggled with the breathing and tried to walk on the treadmill twice more before I gave in and just came off it. I preceded to sit on the couch and watch a football game, the breathing had returned to normal at this point. But I noticed when I was climbing the stairs, that I was beginning to struggle to breathe again, by the time I got to the top of the stairs and walked to my bedroom, I felt as if I was going to pass out.
I went for a shower and the breathing again got worse. Any bit of exertion was leading to difficulty breathing. While at rest, my breathing returned to normal.
The next morning, I did my usual routine and went to work. As I was walking across the car park, I noticed I was still caught up with breathlessness. As the morning went on, my breathlessness was more noticeable whilst just conversing with work colleagues. The next morning, I attended A&E, as I was not improving, there I was told they had found a clot in the left lung, which was surprising as I had been on the DOAC without issue. Haematology in GUH seen me within 7 days and confirmed Bilateral Pulmonary Embolism and a clot on the Tricuspid Valve in the heart.
After 6 or so weeks and little to no improvement on the breathing, examinations and scans were repeated, which showed the clots were not shrinking. This led them to believe that I may now have a condition called CTEPH. After consulting with the PH clinic in the Mater Hospital and GUH arranging for further investigations, it was confirmed in April 2023, that I did indeed have CTEPH. The treatment for CTEPH, dependent on location of clots, is a complex and risky surgery, which is only preformed in Royal Papworth in Cambridge for Irish and UK patients.
Papworth reviewed my case and as my clots were proximal, it meant I was a suitable candidate for PTE surgery. If left untreated, CTEPH can lead to right heart failure within a number of years, so I consented to having the surgery. I had the surgery preformed the end of November 2023, with a successful clearance from the lungs. Unfortunately, a clot in the heart, was diagnosed again in Jan 2024. I am back on the Warfarin post surgery, and I will be a lifer on this anticoagulant.
There is no known cause for my clots. Testing for clotting disorders have been repeated on many occasions and each time they have been negative.
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